Celebrating Sasha and supporting SickKids patient and family centred interprofessional care, staff and family partnership, patient safety, palliative care and Alagille Syndrome. Thanks to family for love and visits, laid back Dr Michael Peer, Dr Jennifer Russell's tireless coordination of LFHC, GI, CCCU, Gen Surg and IGT, all the staff at Hospital for Sick Children and Max and Beatrice Wolfe Centre and final homebound team Stephen Jenkinson, Dr Russell Goldman and TCCAC.

Dr Niraj Mistry is a third year Neonatology resident at SickKids Hospital who has over the last two years explored doctor and patient use of social media and recently presented on how social media can support families in their bonding with baby, team communication with families and family to family sharing. Neonatology 2.0: medicine meets MySpace is the most detailed review of web 2.0 impacts on families in hospital that I have seen. Beside showing evidence for family supports, the many slides demystifies technologies like Facebook for senior medical staff who may not use these technologies.

After recently presenting this review at the NICU Family Care Committee, Dr Nistry sat in on our meeting and we were excited and surprised by his imprompto decision to join the staff-family group to help impliment new e-communication strategies with families. I have quoted liberally from this presentation below as the full PDF is over 15 Mb and 84 slides. Dr Mistry's contact information is placed at the end of this entry should you wish to get the presentation.

(a) What are the needs of parents who have infants in the NICU?
(b) What behaviors support parents with an infant in the NICU?

Six Primary Needs of Parents in the NICU:

(a) Accurate information and inclusion in the infant’s care and decision making
(b) Vigilant watching-over and protecting the infant
(c) Contact with the infant
(d) Being positively perceived by the nursery staff
(e) Individualized care
(f) Reassurance and a therapeutic relationship with the nursing staff

• Most important needs are information and communication, which stem from a need to get control over the situation, inducing an active search for information
• Information seeking is a way of engaging in the care of their infant
• Knowledge supports the adaptation and coping process
• However, many parents hope to meet their information needs from the HCPs, many studies conclude that their needs are not met (eg. high time demands)
• Parents use other information sources to meet their information needs

A literature review to assess how NICU parent use of information sources changed depending on their infants illness trajectory looked at 78 articles from 1990 to March 2008 to conclude:

Learning Curve
• Changing pattern in information use
• Learn the specific needs and responses of their child
• Complicated medical terminology becomes more ‘‘common’’ language, even for parents without post-school formal education
• Empowering parents to become more active participants

Adapted Information Strategies
• Having mastered the medical language, receive more extensive
explanations from the NICU staff
• Develop strategies and learn along the hospitalization time how to
best obtain information eg. being present during rounds and identify
who to approach for the best information

Webcams such as the Angel Eye webcam featured help anxious parents separated from their newborns and help reduce abuse:

• Premature and sick babies face a higher risk for child
abuse and pediatric depressive disorders vs. healthy
• Abuse is thought to stem from the failure to establish a
maternal-infant bond in the sensitive postpartum period
• Webcams allows remote viewing of NICU, enabling a
parent to be “virtually” present, which can reduce
parental anxiety and promote bonding

The presentation then reviewed several studies on Baby CareLink, one of the first parent and staff portals, which concluded that "families from populations that are considered vulnerable, have poorer health outcomes and consequently have more to gain, will use and benefit from collaborative
tools that keep them informed and involved in the care of their children" and another study that found:

• ...parents reported better communication, higher levels of satisfaction with care and tended to take their children home earlier
• Internet portals will be used by both Medicaid and non-Medicaid parents with children in NICUs to meet educational needs
• Suggests an unmet need with substantial clinical benefits if such collaborative technology could be widely deployed

The second half of the 84 slide presentation looked at the proliferation of social media and focuses on the explosion of Facebook groups, including many SickKids groups. The positives are seen to be:

This section included graphic pictures of intubated and wired babies and concern about the appropriateness of families posting such images (Dr Mistry relayed that some parents on a SickKids facebook group asked other parents to take certain pictures down and they did).

Neonatology 2.0 concludes:

While gains in healthcare knowledge and medical technologies
have improved health outcomes, the effective use of information
technology holds the potential to further enhance care and meet the
information, communication and collaboration needs of our families
• Better outcomes, lower costs, and higher patient and provider
satisfaction will be the likely result
• Social Media are used regularly by patients, their families and
healthcare professionals and are here to stay
• There are many benefits to using Social Media to communicate, but
also inherent risks, that may not be as easily perceived
• Thus, we must be vigilant in reinforcing ethical principals and must
educate our patients and families to protect them from these risks
• We must also be mindful of our role as professionals and our responsibility to maintain appropriate boundaries

A new seven minute video summing up the 2009 e-Patient Connections Conference is a fast paced intro to patients engaging other patients and health care providers, in this case face to face, but typically from their computers using social media and blogs to present their personal stories and points of view and articulated needs while they conduct research, chat and network.

"KruResearch — March 24, 2010 — A health care revolution is underway. But it's not being driven by a breakthrough drug or policies coming out of Washington, DC. It's being led by empowered patients who are seeking information, sharing data, and selecting their own treatments more than ever before. At e-Patient Connections, a diverse community of health communicators and marketers gathered to explore innovative ways to reach and engage today's digital health consumers."

The Sasha Bella Forever blog began in 2006 as a tribute to our first daughter and her caregivers as we brought her home from the hospital to die. Expecting just a few days together, we had five incredible weeks. These posts celebrate the life of children with complex care needs and their families and staff partners in care. The posts also share the work of The Sasha Bella Fund For Family Centered Care at SickKids Foundation across the spectrum of care, education and research. From Sasha's experience, the fund and blog focuses on partnership, inter-professional and inter-disciplinary teamwork, palliative and end of life care, patient safety, care for the care-givers, patient and family advisory, peer support and the special challenge of the ICU. Please share, or Like or comment if you are moved by a particular post or think of The Sasha Bella Fund during your charitable giving.Regards,Jonathan Blumberg (Sasha's dad)

The Fund supports family-centered interprofessional care, family advisory, patient safety and palliative care with low cost initiatives like awards, small grants to programs and research, website initiatives, murals, sharing our story and volunteering at the hospital. See a list of fund projects and please consider donating securely online at Sasha's SickKids Foundation page (a tax receipt is emailed immediately) or by calling Laurel at SickKids Foundation.

All donations to a directed family fund like the Sasha Bella Fund For Family-Centred Caregoes to projects at SickKids Hospital with no Foundation overhead.

What is family-centered care? Frank Gavin offered a great definition in the 2005 Family Advisory Council report:

"Family-centred paediatric care is an ideal, an attainable goal, an approach to organizing care, and a set of specific practices. At its root it recognizes the child-patient as first of all, and at all times, a member of a particular family. It therefore regards the family’s involvement in planning, providing, and evaluating the child’s care as not only desirable but necessary. Real family centred care values and accommodates the family’s love and its expertise. In the end, it allows the child, wherever he or she may be, to be always at home.”

Thanks to all the almost 1000 families who have helped SickKids through The Sasha Bella Fund since 2006 and who in October 2009 helped raise $20,000 for Sickkids Hospital and Bloorview Kids Rehab. Special thanks to the performers who donated their special skills, Sho Mo + The Monkey Bunch, Charlie and Little Fingers, Deb Maes, Bloorview therapeutic clowns and Master Choung Taekwondo club, and The Stockyards, Ravisoups and Mildred Pierce for an incredible lunch. Checkout pictures of the 2009 Fun Day by Peter Fenyevesi and Bryan McBurney.

"After much research and exploration and talking with people at the Sick Kids Foundation we have found the Fund that I think addresses the same goals and priorities that Diane and I have for helping to affect change at SickKids. It's called the Sasha Bella Fund and it's named after a beautiful little girl named Sasha Bella Stein-Blumberg. Her parents set up the Fund after she passed away in June 2006. They do great work, particularly in encouraging family-centred care in the intensive units of Sick Kids ... encouraging family centred practice on the general units, advancing palliative care and support for parents and promoting interprofessional education. It's a fund and a cause we are proud to support and we encourage everyone to take a closer look." Janis Purdy and Diane Flacks

Sasha was born with Alagille Syndrome and pulmonary atresia, serious liver and cardiac defects leaving her ineligible for transplants. Cardiac surgery was risky but without more oxygen to her lungs Sasha would die. Our core SickKids team was the 4D nurses, cardiologist Dr Jennifer Russell, surgeon Dr Glen Van Arsdell, catheterization specialists Dr Lee Benson and Dr Jin-Lee and gastrointerologist Dr Simon Ling. The plan included catheterizations to widen tiny arteries, surgery to install a central shunt at 3 months, more caths and more surgery to partly rebuild her collateral arteries into a pulmonary artery. A blue baby came home after birth and grew into a golden haired 18 month cherub with only short hospital stays. She appeared to thrive; yet as we rebuilt Sasha's heart, her liver weakened. A second surgery resulted in hemorrhage, fever, liver failure, portal hypertension, GI bleeds, and a jejunal fistula to her belly. We accepted Sasha was dying when she required daily blood transfusions. She came home supported by the Temmy Latner Centre, TCCAC nurses and SickKids - we expected 3 days with our peach but she stopped bleeding and lived five precious weeks.